Lymphoma Action and EURORDIS-Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 810 rare disease patient organisations from 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

Lymphoma Action are the UK’s only charity for people affected by lymphoma which is the most common cancer in teenagers and young adults (15-24 years old). Lymphoma is the fifth most common cancer in the UK across all age groups and someone is newly diagnosed every 27 minutes – that’s around 53 people every day and 19,000 people each year. Our work drives improvements in the diagnosis, treatment and aftercare of lymphoma. We inform people affected by lymphoma to understand the complexities of this type of cancer (there are 65 subtypes), what it is and the different ways in which it can affect them. We support anyone affect by lymphoma by providing information, phone and live-chat support. We also run a range of national events about living well and beyond the diagnoses of lymphoma including Live Your Life events. We connect people affected by lymphoma to the best resources available for their needs, as well as to other people affected by the same experience and/or sub-type of lymphoma.